Advocacy

Advocacy, The scoop

The Scoop from Capitol Hill – February 2025

March 3, 2025

House and Senate Republicans have been focused on passing the Administration’s priorities. The Senate approved a billion-dollar budget framework focusing on defense and border enforcement funding. On the other side of the Capitol, the House recently passed its own budget framework. This package is wider in scope and costs.

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Hydrocephalus Association Medical and Scientific Advisory Boards Statement on Cuts to NIH Funding

Hydrocephalus Association Medical Advisory Board And Scientific Advisory Board Issue Response to Cuts to NIH Indirect Cost Payments

February 15, 2025

The Hydrocephalus Association Medical Advisory Board and Scientific Advisory Board urge the Administration to rescind the directive for the National Institutes of Health (NIH) to cap indirect costs for research funding at 15%.

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Hydrocephalus Community Advocates for Change on Capitol Hill

February 10, 2025

The Hydrocephalus Association brought over 50 key leaders from the hydrocephalus community to advocate for change by meeting with their congressional representatives on Capitol Hill.

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January, Advocacy, Hydrocephalus

The January Hydrocephalus Scoop on the Hill

February 5, 2025

The 119th Congress is in full swing. Republican leadership is zoned in on crafting a large legislative package that includes key priorities around tax, immigration, and budgetary issues. The package will likely go through a process called reconciliation, which allows certain budget-related bills to bypass the 60-vote filibuster in the Senate.

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Advocates, Capitol Hill

Advocates to Rally on Capitol Hill for Hydrocephalus Awareness and Research Funding

January 31, 2025

50 key leaders in the hydrocephalus community from 18 states will convene in Washington, D.C., for Hydrocephalus Capitol Hill Day.

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Executive Orders, trump

Hydrocephalus Association Expresses Concern Over Executive Orders That Could Affect Hydrocephalus Research

January 28, 2025

The Trump Administration recently issued Executive Orders that could have long-term consequences for hydrocephalus research, potentially impacting the health of hydrocephalus patients, particularly children.

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Hydrocephalus Community, 2024

Looking Back at Key Accomplishments in 2024

December 23, 2024

2024 was a year full of legislative accomplishments for the Hydrocephalus Association and the broader hydrocephalus community. Our successes could not have been achieved without the hard work of advocates from across the country. Partners in Congress were some of the strongest contributors for our mission as well.

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Hydrocephalus Challenges

U.S. House Foreign Affairs Committee Holds Hearing on the Challenges Affecting Global Hydrocephalus Patients

December 19, 2024

The House Foreign Affairs Subcommittee’s November 20th hearing discussed global brain health challenges, focusing on hydrocephalus in developing countries. Experts, including Dr. Benjamin Warf of NeuroKids, highlighted the need for better care and training to support patients, particularly in low-resource regions. The hearing also addressed the lack of USAID programs for brain health and the importance of international aid for hydrocephalus treatment.

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The Exclusive Hydrocephalus Scoop on the Hill | Key Updates for November 2024

December 3, 2024

Washington, D.C. is buzzing as Congress pushes key legislation and the Hydrocephalus Association partners with advocates to drive priorities forward. With government funding set to expire on December 20th, a short-term resolution is likely. The new presidential administration and Congress will bring major changes, especially in the first 100 days. Stay tuned!

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Traumatic Brain Injuries Delegated as Chronic Condition by Medicare

November 13, 2024

In a monumental step for Americans living with traumatic brain injury (TBI), the Centers for Medicare and Medicaid (CMS) recently added TBI as a qualifying condition for Medicare Advantage Chronic Special Needs Plans (C-SNP).

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open enrollment

What Hydrocephalus Patients Should Know for Medicare Open Enrollment

November 13, 2024

As Medicare beneficiaries navigate through the open enrollment period, it is crucial for them to understand the surplus of 2025 changes as they choose a new Medicare insurance plan. The Medicare Open Enrollment Period began on October 15 and will close on December 7th. 

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Hydrocephalus Scoop Capitol Hill October

Get the Exclusive Hydrocephalus Scoop on Capitol Hill for October 2024

October 28, 2024

As healthcare advocates race to secure passage of critical bills before the end of the 118th Congress, the Hydrocephalus Association (HA) is joining forces on Capitol Hill, advocating for vital legislation to support Medicare coverage for breakthrough devices, strengthen the medical workforce, ensure fair billing practices, fund brain research, and raise hydrocephalus awareness.

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Advocates Participate in Rally for Medical Research To Educate Lawmakers on Hydrocephalus Research

October 7, 2024

The Hydrocephalus Association recently brought advocates to Washington, D.C. for the Rally for Medical Research Advocacy Day on Capitol Hill. This event united a diverse group of stakeholders, including doctors, scientists, patients, and caregivers, to advocate for strong funding for the National Institutes of Health (NIH). Grassroots advocates—patients and caregivers—from more than five states participated to represent the hydrocephalus community.

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Get the Exclusive Hydrocephalus Scoop on Capitol Hill for September 2024

September 27, 2024

Stay informed with the latest updates on hydrocephalus advocacy from Capitol Hill as we highlight key legislative efforts and community engagement for September 2024.

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Hydrocephalus Scoop

Get the Hydrocephalus Scoop on Capitol Hill for August 2024

September 5, 2024

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

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Hydrocephalus Scoop

Get the Hydrocephalus Scoop on Capitol Hill for July 2024

August 9, 2024

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

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Hydrocephalus Scoop

Get the Hydrocephalus Scoop on Capitol Hill for June 2024

July 1, 2024

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

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National Partnership for Pediatric to Adult Care Transition (NPPACT) Hosts First Congressional Event

June 27, 2024

The Hydrocephalus Association, alongside several other organizations, hosted a Capitol Hill Briefing to address the significant challenges young adults with pediatric-onset conditions face when transitioning to the adult healthcare system, highlighting the urgent need for improved continuity of care and systemic support.

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Patient Engagement: A Key Healthcare Priority

Patient Engagement: A Key Healthcare Priority

June 3, 2024

HA staff recently attended the National Health Council’s (NHC) Science of Patient Engagement Symposium. The event, hosted in Washington, D.C., brought together an array of patients and patient organizations to speak on the importance of patient-centered programs and policies within the American healthcare system.

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Hydrocephalus Scoop

Get the Hydrocephalus Scoop on Capitol Hill | May 2024

June 3, 2024

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

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